'We moved for surgery that could be done in Ireland': Mum of newborn hits out

'We moved for surgery that could be done in Ireland': Mum of newborn hits out

The mother of a seriously ill baby from Cork who has undergone eight surgeries in a month in Sweden has criticised the Government here for its failure to adequately fund the medical system in this country.

Eimear Murray's four-week-old daughter, Jorja Murray Barry, has a rare condition called Congenital Diaphragm Hernia. The condition involves a defect in the diaphragm.

The diaphragm, which is composed of muscle and other fibrous tissue, separates the organs in the abdomen from those in the chest. Abnormal development of the diaphragm before birth leads to defects ranging from a thinned area in the diaphragm to its complete absence.

An absent or partially formed diaphragm results in an abnormal opening (hernia) that allows the stomach and intestines to move into the chest cavity and crowd the heart and lungs. This crowding can lead to underdevelopment of the lungs (pulmonary hypoplasia), potentially resulting in life-threatening breathing difficulties that are apparent from birth.

Eimear is living in Stockholm as Jorja continues to undergo emergency treatment to save her life.

She told the Opinion Line on Cork's 96FM that a pregnancy scan indicated that Jorja's major organs were in her chest and her heart was pushed over under her right arms from the pressure.

Jorja was born in the Coombe Maternity Hospital and rushed to Crumlin Children's Hospital in Dublin. She was placed on an ECMO machine which stopped her from going in into cardiac arrest and dying.

However, while the machine is working and in use in Crumlin it is not available to Jorja on a long-term basis because her heart is in perfect condition. Eimear says that basically a lack of funding is at the root of their trip to Sweden.

When Jorja was 36 hours old she was airlifted to Stockholm for treatment. When surgeons opened the toddler up they found her condition was far worse than expected.

Eimear says she is angry about the spending of €500,000 on the clean-up of the Ellis' Yard site in Cork city which has been a dumping ground for illegal rubbish for years.

She says EMCO machines cost between €50,000 and €100,000.

"The money and the machines could have saved babies' lives. They are cleaning up peoples rubbish that no-one is getting caught for, no repercussions, nothing. People can still continue to dump up there and we continue to pay to clean it up. Yet the Government can't pay to save a child's life.

"Here I am after uprooting my family and my two kids to come to Sweden to get life-saving treatment for my poor three-week-old princess because the Government are too busy cleaning up after people to put money into resources actually needed in Ireland like healthcare.

"I guarantee if I asked any of the TDs around they wouldn't have a clue what ECMO is.

ECMO is a machine that saved my newborn 10-hour daughter from having a cardiac arrest that would have resulted in her losing her life. But yet something like this isn't available in Ireland unless they have a heart defect.

"Instead she was flown to Sweden and my family was forced to be torn apart and I had to be without her in different countries as I couldn't travel immediately with her after having a C Section.

"The foundation for an ECMO unit is in Ireland but the resources to expand it so babies like Jorja aren't forced miles away from home at hours old just aren’t even thought about because the money isn't in the budget."

Eimear said the whole situation has been a nightmare.

"They had to stabilise her so the minute she was born she was taken away and brought to a paediatric team.

"She went downhill fast, and was in danger of a heart attack while being transferred from the Coombe to Crumlin.

"I was emotionally numb and I got myself up out of bed eight hours after the Caesarean section so I could go and see her in Crumlin before she was transferred to Sweden.

Jorja Murray Barry
Jorja Murray Barry

"I was distraught. She was just lying there...kept alive by machines.

"She will be four weeks old on Friday and is here four weeks with her dad. I discharged myself from the Coombe on the Sunday and I flew to Stockholm on the Tuesday."

The couple are staying in a room in the old quarters of the Swedish hospital. Eimear has yet to hold her baby.

"You feel you have been robbed of that newborn stage. She will be taken off ECMO but when she returns to Crumlin she will have to be taken off the ventilator and feeding tube.

"We are trying to sort our bills and commitment at home as well as the expense of living and eating on hospital grounds."

She said if Jorja had been born with a heart complaint they would still be in Ireland.

"Because she doesn't have a heart condition they wouldn't put her on ECMO long-term so we had to go to Sweden.

"My whole family had to move to a strange country - where they have been great - so our child has a chance to live.

We moved for surgery that could be done in Ireland, but can't be, because of lack of funding.

"She is amazing. She is progressing after all she has gone through and she is still trying to act like a normal newborn. At this stage, we should be at home with people calling and showing her off, but we can't do that."

Eimear said that she is without social welfare or financial support from the Government in relation to the emergency treatment because Jorja's emergency evacuation took place before her birth was registered.

They are currently living off the proceeds of a bingo night organised by a friend.

A GoFundMe page has been set up to assist the family with their costs in Sweden.

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